Whew, our first week at Mayo is over and we are all exhausted. Josie continues to hang in there, but is in need of a couple days break from doctor's offices. Today we saw the ear, nose, and throat doctor for an evaluation of Josie's feeding issues. It was a good visit and she has ordered more tests to determine why Josie is aspirating and having so much difficulty swallowing. The doctor said that the aspirations are causing Josie to refuse to eat because she feels the need to protect her airway. This may be why we've seen a steady decline in her eating as she has gotten older and developed more of a defense mechanism. While Josie is sedated for the MRI on Monday they are also going to examine her airway with a camera and do a biopsy of her lungs to determine if substances are entering her airway when she eats. On Thursday they are going to do a more extensive swallow study. Both of these tests should tell the ent if there is something anatomically that is making it difficult for her to eat and hopefully can then be repaired.
After that appointment we checked in with the pediatrician to review what we've learned so far and talk about the upcoming tests. He said a lot is hinging on the brain MRI and 3d ct scans on Monday. We are going to see him, as well as genetics when the results come back. Now we are here until Friday, but we are just glad we are getting so much done.
On a Henry note, he is not enjoying the sleeping arrangements:) Josie is sleeping pretty well in the hotel crib until about 3 in the morning and then I am bringing her into bed with me so we can all sleep a little longer. She keeps kicking Henry and he kicks right back. I feel like I'm already a referee between them:)
Hope everyone has a good weekend. We are going to swim and take it easy.
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